Talked to Dr. Barry Krakow

[IUsedToSnore]

Hi Everyone,

So frustrated over here. This has been almost 10 years of just trying to get an accurate diagnosis, the proper machine and the proper settings.

I finally did a Skype appointment with Dr. Barry Krakow after talking to several doctors in my area and complaining about continuous middle of the night insomnia (unrelenting - every single night) and unrefreshing sleep/daytime zombiness. Good guy. His feeling is that my APAP is a waste of time (he said his sleep center hasn't given anyone a CPAP/APAP in a decade_ and that my nightly insomnia is likely due to small arousals that aren't getting flagged by my machine, or really visible on Oscar. He stated that even the "flow limits" probably aren't accurate.

He suggested I make an appointment at Maimonedies in NM because he trained all the sleep techs and he has faith they will be able to get to the root of the whole thing, figure out the right machine and get a good titration. I'm just stressed about the cost, I'm out of work right now and my insurance certainly isn't going to cover the sleep study in another state.

So, here I am. What I'm wondering is, what do I do? If I go out and buy a bi-pap, will I really be able to determine if it's the right machine? I assume I would know if my centrals go through the roof? Do I just go straight to ASV? How would I even know good starting settings? Is this just stupid? Should I just cut out the BS and fork over the money for the sleep study? How much reliability will I have in knowing if my machine is working well for me if I do this myself and don't have an EEG to identify whether or not I'm staying in the deeper stages of sleep? Would a titration study even really show that?

Thanks in advance for any suggestions. This forum is like the beacon of light in the nightmare that is navigating the stupid medical system.

[slowriter]

If I go out and buy a bi-pap, will I really be able to determine if it's the right machine? I assume I would know if my centrals go through the roof? Do I just go straight to ASV? How would I even know good starting settings? Is this just stupid? Should I just cut out the BS and fork over the money for the sleep study? How much reliability will I have in knowing if my machine is working well for me if I do this myself and don't have an EEG to identify whether or not I'm staying in the deeper stages of sleep? Would a titration study even really show that?

You're asking the right questions, and as I think you probably already determined, there's no straightforward answer, considering all the variables, financial and otherwise.

I was going to ask if you've posted your OSCAR data, but looking at your profile, you indeed already have; in multiple threads.

In the latest thread, people there are recommending an ASV because there's evidence from your sleep study of CSA.

Krakow is a big advocate of ASV in general, and certainly for CSA.

It seems like it would be ideal, given your situation, to find a lab that has expertise in CSA and ASV, that will be covered by your insurance. 

The argument to insurance is that you're failing CPAP, and because of previous study demonstrating CSA, that you need a study for the efficacy and titration of ASV.

Can you talk to a doctor to help you find a solution along these lines?

[IUsedToSnore]

Part of my issue is that I get the feeling that "failing APAP" just means having an AHI over 5. I've learned that insurance is a total nightmare, and it's best just to plan to fork over another $3000 to get this all settled.

The thing is, I want it to be settled once and for all, and I'm just trying to figure out the best way to ensure that happens. Part of my problem is that I've had TWO previous sleep studies, with the first one (overnight at a major sleep clinic in a top hospital in NYC) showed absolutely no evidence of sleep disordered breathing, and my most recent one shows moderate apnea with all centrals and hypopneas with a bizarre diagnosis of obstructive. I actually went back to the guy who read the second sleep study, and he stated that he was "just a surgeon" and "this wasn't really his area of expertise". (WHY THE HELL IS HE SIGNING OFF ON SLEEP STUDIES THEN - different topic of convo, but this is the kind of crap I'm dealing with).

Anyway, thank you for your response. It's all stuff to think about.

[slowriter]

Part of my issue is that I get the feeling that "failing APAP" just means having an AHI over 5. 

That is a barrier, but in my case, I just emphasized to my sleep doc that my daytime symptoms were not only not improving on CPAP, they were getting worse. That plus the sleep study showing CSA might be enough, but YMMV of course.

Another option, that is the route a lot of people here take, is to buy a used ASV machine out of pocket and try it out. There aren't a ton of setting options, so it shouldn't take much to find the right ones for you with help from the forum.

[Sleeprider]

Explain your financial issues to Dr Krakow, or for that matter, any doctor you have a good relationship with and ask if he will prescribe ASV based on a remote consultation. Offer sleep reports, Oscar data etc. you will certainly pay a consultation fee but with a script in hand you can order a lightly used Resmed Aircurve 10 ASV from Supplier #2 for $1350, and get on with it. You can choose what follow up to get, but this will solve the problem. Another option is buy fro DotMed or Craigslist or even that other CPAP talk forum and get a machine without a prescription. You seem willing to spen the money, so where there is a will there is a way.